Scarlett said it, but you should not. Well, at least when it comes to estate planning.

To some, estate planning means thinking about difficult topics—what will happen to you, your possessions, and your family when the time comes that you no longer have a voice. Understandably, it is tempting to think about these things tomorrow. However, I want to strongly emphasize to everyone—do not “think about it tomorrow.” Think about it today!

Estate planning does not have to be a dreary process. Estate planning is an exercise of your personal autonomy. It is an empowering thing! There are legal schemes in place to protect and defend your voice—use them! Putting your estate planning off until “tomorrow” does nothing but undermine your present power to safeguard your desires, dignity, and voice. Anything can happen tomorrow, what if your voice is gone before you’ve taken action to materialize it?

For this reason, it is incredibly advantageous to plan proactively. Yes, sadly, there may come a day when you cannot control all that you once did. But how empowering is it that you can still have a strong, clear voice that everyone must listen to? Estate planning protects your voice. Do not be tempted by the motto of Scarlett O’Hara. Use your power now to protect your voice from the uncertainty of tomorrow.

When a client approaching us with a problem he or she wants us to solve, it not only raises a client-attorney relationship, but will also possibly raise a relationship between the attorney and a third party, especially in the elder and disability law clinic, when people need to be accompanied by another person, both ethical and practical issues will arise.

First possible issue is confidentiality between the client and attorney. For the attorney to be able to communicate with a third party, he or she need a permission from the client. However, attorney-client privilege protects only confidential communications between an attorney and client in connection with the attorney providing legal services. Having the client authorize disclosure to the third person doesn’t save the privilege. There is no privilege for an attorney communicating with a third-party. The clients need to be clearly informed about the confidentiality issue before they permit any disclosure.

Another issue is client-communication. For example, in an estate planning situation, when an elder or disabled person needs a will, he or she may visit an attorney while accompanied by a family member. Due to the confidentiality issue, the attorney wishes to talk to the client alone. In the meantime, if the client keeps the family member in present during the meeting, the attorney needs to observe whether the client makes the decision himself or herself. If the client has trouble communicating, and the attorney communicates with the family member more often, an ethical issue may arise. For instance, if Mom is disabled and needs a will, but Daughter is the one mainly talks to the attorney, and Daughter is the beneficiary of the will, it may raise concerns that Mom is under influence or control of Daughter, especially when Daughter is the only one taking care of Mom. To eliminate these concerns, the attorney may request a private conversation with Mom. This may create tension between Daughter and attorney, and even create trouble for Daughter and Mom.

To release the tension, the attorney needs to co-operate with the client and the third-party. First, the attorney should explain to the client the confidentiality issue in the first place to avoid any confusion. Second, if the client insists involving a third-party to help the whole process, if the attorney has any concern about undue influence, rather than accuse the third-party, he or she should explain in details about the legal requirement on the client’s independent decisions. On the other side, the attorney’s insistence on talking to the client alone also removes doubts on the third-party in the future. Finally, if the third-party still refuse private communication between the client and the attorney, the attorney may withdraw himself or herself, and even report this suspicious situation.

Involving a third-party is quite common in elder and disability cases. How to deal with the third-party while still maintain a good relationship with the client is a critical skill for new lawyers.

Upfront, I believe I should provide a brief description of myself. My name is William, and I am a gay male in my late twenties. Although I grew up in the liberal suburbs of Washington, D.C., I come from a socially and religiously conservative family.

I knew I was gay from an early age, and unquestionably the most difficult part of fully accepting my sexuality has been telling members of my family. Frankly, I grew up around a lot of people who held very disparaging views of gay people. As a result, I spent many years praying I would wake up one day and be straight. As I got older, however, I realized that I would always be gay and will eventually have to come out to everyone meaningful in my life, particularly my family. Coming out to my immediate family member has resulted in a variety of reactions: from anger to tears to indifference to joy, I believe I have ran the gamut of emotions.

While there is a lot of discussion about coming out to parents and siblings, a topic that I feel does not generate enough discussion is coming out to your grandparents. At least for me, grandparents were probably the most difficult group to handle because of the generational divide and the infrequency with which I saw regularly saw them.

My paternal grandfather passed away when I was a toddler, before I had any idea of what it means to be gay. My maternal grandfather and paternal grandmother both passed away when I was in college. At that point, I was already out of the closet to all my friends and a few select family members. However, these grandparents passed away before I ever told them I am gay. Looking back, I am sad to think that my deceased grandparents never got to know the “real” me. While I do not identify myself solely by my sexuality, it has undeniably shaped who I am and how I view the world. At the same time, I knew I did not have the courage then to come out to them, fearful that their love of me would not be strong enough to accept news that I knew would be extremely difficult for them to understand.

My maternal grandmother, Meme, is my only grandparent still alive. My aunt told Meme a few years ago that I am gay, believing it would be best for my grandmother to hear it from her. To my surprise, my grandmother said she did not care. Since then, an enormous weight has been lifted off my shoulders, as I am no longer carrying around the insecurities about coming out that plagued my childhood. Now, I bring my boyfriend to family events (a scenario I would have never thought possible when I was growing up). At my brother’s wedding, my boyfriend and Meme bonded over Slippery Monkey cocktails.

I really do not believe in a one-size-fits-all approach to coming out to family members, particularly grandparents. Instead, I think every family is different, and we need to respect each gay person’s choices with telling their family. This is my story about coming out (or staying in) to my grandparents. It is a story filled with pain, regret, and new beginnings.

I came to the Elder and Disability Law Clinic with a unique experience; both of my parents are Elder Law attorneys. I have heard them discussing some of their most difficult cases, cases involving family members fighting over loved ones. I was shocked that family members could be so at odds that they needed to go to court while a parent was dying. I remember thinking how that would never happen in my family because we all love each other and just want what’s best for our parents/grandparents.

However, I have started to learn that in many of these situations, it’s not that one member of the family is acting maliciously (thought that obviously can be the case); instead, both children often care so much for their parents but they sometimes just don’t agree on what is best given the circumstances. As my own grandparents have begun to age, I can see much more clearly how such disagreements can occur.

Another common problem that arises when a family member is dealing with an aging senior is that the senior may become uncooperative and unwilling to compromise. In order to alleviate this tension, it is important to remember that the senior does not want to feel like he is losing control. Approaching this conversation as a discussion about what the senior wants is one way to hopefully avoid conflict. Additionally, having this conversation early, while the senior is still competent, is all the more important for avoiding such a tension.

My mother and uncle recently had this conversation with their own parents, my grandparents. It was by no means easy to bring up. It is hard to say to a parent, what do you want me to do if you can’t take care of yourself? However, at the same time, this is extremely important to determine what would be best for my grandparents were they to become incapacitated. It is a harsh reality, but you never know what may happen. For instance, my grandpa slipped on ice the other day and took a rough fall. Fortunately, he was not seriously injured. However, had he broken a hip, he may have needed some long-term care.

This is why having that difficult conversation is vital. It’s not only important for the seniors to assert their wishes, but also for other family members to understand those wishes and be on the same page when carrying them out. It is a necessary step to avoiding misunderstandings or disagreements amongst siblings or spouses, which is important for avoiding unnecessary and expensive litigation. Having this conversation with an aging loved one is an important step in EVERY family in order to ensure any easier transition as a parent/grandparent begins to age.

Our “legal, social and economic worlds” assume that adult individuals are able to make responsible decisions on behalf of themselves. That is, all adults are presumed to have legal capacity unless a court with proper jurisdiction deems otherwise. An “incapacitated person” is an individual found by the court to lack the mental and/or physical capacity to care for himself, including his inability to satisfy his basic health, safety, care, education, habilitation, and therapeutic needs without assistance. In such a case, a court appointed guardian may be appropriate to prevent the incapacitated person from victimization and to ensure that his best interests are accounted for.

A “guardian” stands in a fiduciary relationship with the incapacitated person, owing him the fiduciary duties of care, loyalty, and good faith. Because a guardian must act in the incapacitated person’s best interests, a guardianship may be full, limited, or temporary, depending upon the individual’s level of capacity. This is because capacity is not a “light switch”—there are shades of grey and varying degrees of capacity, which call for partial substitute decision making. That is, where an individual’s loss of capacity is not complete, the guardian’s powers should be “limited” to address solely the needs of the individual, so as not to unnecessarily restrict his autonomy. For example, if an individual’s incapacity prevents him from making major health care decisions, but he is otherwise capable of caring for himself on a daily basis, the court may appoint a limited guardian solely to make such health care decisions, leaving all other decisions up to the discretion of the incapacitated person.

“Full guardianships” are appropriate in instances where an individual’s loss of capacity is complete (that is, where an individual is incapable of making all personal care decisions for himself), but should be pursued as a last resort. Where an individual enjoys some capacity, a less restrictive method, such as the “limited guardianship,” should be used to provide the needed protections. In theory, limited guardianships recognize that the appointment of a guardian is a double-edged sword—although beneficial to the incapacitated person, it results in a severe loss of autonomy and independence. Thus, limited guardianships help to lessen the blow by curbing the infringement and intrusion into the incapacitated individual’s life. Yet, despite its apparent advantages, families are sometimes opposed to limited guardianships believing that it is “not feasible to detail the contours of the incapacity and [to] create an appropriate, individualized guardianship.” However, this belief is misguided—a medical evaluation helps to determine the degree of capacity, and a well drafted petition will outline all of the rights the incapacitated individual will retain. If the individual’s capacity should change over time, the guardian’s power may be increased or decreased as appropriate.

My paternal grandfather “Papa” passed away in November 2010. The last year and a half of his life was spent in an institution where he received care from competent and sympathetic nurses and where my grandmother visited him daily. When my grandfather was placed into assisted living following a stroke, my dad and I began taking road-trips to see him every month. It became a sort of tradition for the two of us. I grew up in the Dallas-Fort Worth area of Texas, about seven hours away from where my grandparents lived in southeast Kansas. Once a month we would load up the car with snacks and gas and make the seven hour trip to Kansas. Seven hours in the car might not sound that great, but we always had a good time together. Along with eating lots of junk food we listened to the Radio Classics channel on XM and talked, and talked. My dad would often tell me stories about his childhood and about Papa.

We always brought Papa Lindor Truffles when we visited—between us, my aunt, and my grandmother I knew he never lacked for sweets and junk food. At first, he didn’t seem all that different to me. He was the same Papa I knew, maybe a little weaker. However, over time I began to notice the changes. He stopped being so responsive to us when we visited, and he was more confused about who we were and where he was. He was eventually moved to a nursing home, where he spent the last two months of his life.

When he died, it wasn’t all that unexpected. I last saw him on Friday of my Thanksgiving break, and he died the following Tuesday. That week following his death was hectic, as those weeks often are. It was an odd feeling: just like that, my grandfather was no longer here. I had just seen him, and now he wasn’t here.

From that experience, I saw what it is like to lose a parent. I saw my dad struggle to watch his father slip further and further away. I know it must have been hard for my dad to see Papa like that—to see a once strong and capable man be slowly conquered by his own body and mind. My dad treated my grandfather, his dad, with dignity, kindness, and gentleness throughout his last months. Month after month he dutifully made the trip to Kansas to spend a couple of days with his father.

I am grateful for the time that I spent with Papa, who has been gone now for almost six years. I am grateful for all those road-trips and all those truffles. But mainly, I am grateful for the time that I spent with my dad. By traveling with him to Kansas every month to see Papa, I shared a special and memorable experience with him. By watching my dad on those trips I learned how to prepare my heart for loss, how to treat my loved ones with dignity when they need and deserve it most, and how to cherish those final days.

We are so careful to prepare our bank accounts and our estates for loss, but let’s remember to prepare our hearts as well, and be sure to cherish the time we have with those we love.

You’ve probably heard of a DNR—it stands for “Do Not Resuscitate.” Either you have one, or you’ve heard it mentioned on one of the myriad doctor shows on TV. Many clients haven’t heard of a living will, and those that have assume that living wills are interchangeable with DNRs, because both deal with end-of-life treatment decisions. In fact, DNRs and living wills don’t do the same thing at all! This post highlights the crucial differences you need to know about DNRs and living wills so you can decide which one is right for you!

What’s the Difference?

A living will explains how and when you want to receive medical treatments if you become incapacitated (think, in a vegetative state, or terminally ill). Basically, it tells the doctor to do whatever s/he can to save you.

With a living will, you can first decide how you want to be ruled incapacitated (having at least two physicians rule a patient incapacitated is standard). You can then decide how you want to be saved— do you want to be kept on artificial life support? How do you want to receive treatment? Which medications do you want to be given, and how much (just enough to alleviate pain?)? Are you comfortable with being put on mechanical ventilation?

A DNR, on the other hand, does the opposite of a living will. A DNR tells the doctor not to take life-saving measures should you stop breathing or should your heart stop; specifically, it directs the doctor not to perform CPR.

Why Have a Living Will or DNR?

If you have a living will or a DNR, you’ve given yourself all the power: You get to decide how you want to be treated, so if you aren’t able to make that decision when the time comes due to incapacity, you’ve already set the ground rules! You’ve already determined how you want your end-of-life treatment to work.

What’s more, we recently had a client who was concerned about her children having to make difficult decisions once she enters a hospital and can’t make decisions for herself. With a living will or a DNR, you make it easier for your loved ones, who may be struggling with what decisions to make, by telling them what your wishes are.

So, with a living will on file, you’ve given yourself the power to decide that you want life-saving measures to be taken. Alternatively, with a DNR, you’ll ensure that your wish for no life-saving measures to be taken is honored. Either way, you’ll be taking a proactive step now to ensure you’re protected in the future!

November 10, 2016 / laciccone / Comments Off on Nobody Thinks They Need Long Term Care Planning, Until They Do. For Some, That May Be Too Late.

By Lance Cummins, Elder & Disability Law Clinic Student, Fall 2016

For many people, the concept of planning for the future just brings to mind the thought that they need to write out a will, but there’s more to it. With the average life expectancy in the United States being around 80—it was only 47 the last time the Cubs won the World Series before this year—people can often expect to live many years after retirement. However, for some people, those years will not always be healthy, and healthcare expenses can take a toll on the retirement accounts of even the best planners.

Recently I had the misfortune of seeing someone I know forced to retire early due to a diagnosis of Frontotemporal Dementia (FTD). FTD is similar to Alzheimer’s, and in its early stages is often misdiagnosed as such. FTD tends to first affect language skills like speaking, writing, and comprehension. Personality changes, resulting from changes to the brain in areas controlling conduct, judgment, and empathy, often make caring for individuals with FTD difficult. While uncommon, FTD tends to begin much earlier than Alzheimer’s, often affecting people in their 40’s and 50’s.

In this case, the person affected was an accountant who always kept a close eye on his retirement accounts and knew exactly how much he had, how much he needed to retire on, and how and when he was going to get there. Once his symptoms forced his retirement, however, all of his retirement planning quickly went out the window.

At that point, the proper thing to do would have been to immediately consult with an elder law attorney in order to ensure that he could be placed into long term care when it became impossible to care for him at home, without leaving his wife without the benefit of all their advanced financial planning. For example, Medicaid may be used to help pay medical expenses for an institutionalized spouse, while allowing the non-institutionalized spouse to retain a portion of their assets and retirement funds. However, Medicaid will only allow the non-institutionalized spouse to retain a limited amount of any retirement funds, requiring all the money over a certain amount to be used to defray medical expenses before Medicaid will kick in to help. To guard against people either spending or giving away all of their money right before applying for Medicaid, the government has a five-year lookback period. That means that when applying for Medicaid, the government will examine the applicants’ finances over the past five years to see if any assets have been shifted away, and will then impose a penalty period, which essentially means Medicaid benefits will not kick in for a period of time in an effort to recoup the missing money.

In this case, with the help of an elder law attorney early in the process, the couple could have made some financial decisions to do something with their retirement money sooner, outside of that five-year lookback period. Perhaps they could have enjoyed his retirement for a few years while he was still able to do so. They could have taken care of some long delayed repairs to the house or bought a new car to replace their twenty-year-old vehicle that constantly needed repairs. They could have set up a trust, or transferred ownership of some assets. Regardless of what they would have chosen to do with their money, with proper planning they would have had the power to choose.

Instead, they did what most of us would do. They slashed their spending and saved every penny they could for the inevitable medical expenses that were sure to come. FTD can be a slow moving disease at first, and they planned to stretch things out for as long as possible. Even as the disease progressed, they refused to take any drastic financial action, feeling that keeping that money in the bank was the wisest course.

Unfortunately, a few weeks ago he had to be rushed to the hospital. While the immediate danger is past, it is unlikely that he will be able to live at home ever again. What does this mean for them? In short, it is too late to do much of anything. The vast majority of the money they have kept sitting in the bank all this time will have to be spent on nursing home care before Medicaid will help. While some limited options still remain, once he has been institutionalized for 30 days even those options will be gone. Medicaid will look back to the first day of the month he was institutionalized, and whatever assets they had on that day will be required to be spent, minus her allowance, before they will pay anything.

The takeaway from this should be to plan before you think you need to do so. We never know when disaster will strike, and with the complexity of Medicaid rules, common sense things like saving your money may not always be the best approach. Consulting an experienced elder law attorney early, before you think you need them, and before it’s too late for them to help, can be critical to averting disaster later.

Have you ever heard the saying “age is but a number?” Typically, it is a harmless phrase that is thrown around when a friend has a birthday or a loved one is celebrating retirement. It is fun to say, and uplifting for others to hear, but nothing could be further from the truth when talking about a mentally challenged senior.

Unlike members of the general population which have the capacity to protect themselves against abuse, manipulation, and fraud, a mentally disabled person is more vulnerable to these dangers and may even have difficulty making important life decisions. When that struggling individual is a child, the solution is simple– his or her parents can and do make all the important medical and life decisions because the law gives them that authority. However, what happens when your precious child becomes an adult who is mentally unable to make decisions but legally holds the right to do so? In those cases, it may be time to seek guardianship because age does matter and could prevent you from helping your child in ways that you have in the past. Guardianships are used for mentally incapacitated individuals of all ages who are unable to make sound decisions regarding their own well-being and financial security.

Some people will avoid instituting a guardianship, seeing it as an affront to a loved one’s freedom. This is an understandable reaction considering American culture. At a young age, we are taught the value of freedom and few, if any, words are considered more precious. Freedom may seem like a simple word, but for centuries brave men and women have valiantly fought to ensure that Americans remain free. Reflecting upon these sacrifices makes it difficult to give up our own freedom and gut wrenching to take someone else’s freedom away. But before eliminating all possibility of a guardianship, there are a few things to consider.

While it is true that guardianships take away an individual’s right to make legal and personal decisions for himself; in return it gives him protections that are not otherwise available. Without a Guardian, a mentally incapacitated individual is more likely to fall victim to poor decisions and/or outside influences. Now that doesn’t mean that you should rush out to seek guardianship over all your adult relatives who make poor choices, nor would the system allow it. The beauty of this process is that the court decides when a guardianship is appropriate based largely upon a medical evaluation and the input of a court-appointed lawyer referred to as the Guardian ad litem. Put simply, if an individual has the mental capacity to make decisions and understand the consequences of those decisions, then guardianship will be denied. Also, note that guardianships are not always forever; they can be reversed via a court ruling if circumstances change. Lastly, guardianship is a fantastic planning tool for caregivers. Although it can be difficult to think about, it is important to consider what should happen to our dependent loved ones once we pass on or are no longer able to care for them. If a successor guardian is included in the guardianship petition, it makes for a much smoother process once the primary guardian is no longer able to serve due to death, illness, or for other reasons.

Thus, guardianships shouldn’t viewed with disgust; they should be embraced as a way to protect our loved ones. A guardianship doesn’t change who the person is. They are and will forever be their own person and nothing stops the Guardian from considering the individual’s wishes when making these important decisions. While freedom is one of the most important things a person can have, when that freedom endangers a person’s health or financial security, a guardianship is often best gift that we can give.

“Dementia does not rob someone of their dignity, it’s our reaction to them that does.” This quote by dementia and Alzheimer’s care expert Teepa Snow speaks volumes about the hidden suffering of those living with one of the most common disabilities among the elderly – dementia. One of the biggest hurdles to overcome in improving the quality of life of any disabled individual is understanding their obstacles and their experiences so you can best give them the respect and dignity they deserve.

I used to work at a hospital, and my boss would always refer to the Sylvia Plath poem “The Eye-Mote” when trying to explain what dementia patients who are unable to communicate really want. The poem, which is about Plath’s own extended hospital stay where she was unable to move or speak, shows the experience of being trapped in a body from the patient’s side. She spends weeks lying in a hospital bed, aware but locked in, unable to communicate her needs and stuck passively watching as caretakers and visitors shape the world she lives in. My boss would point to a specific line and say that it crystallized the needs of those living with dementia – “What I want back is what I was.”

That hospital required caretakers had to go through an exercise known as the “simulated dementia experience,” which was meant to give them a taste of what life with dementia is like. I went through the simulated dementia experience, and would recommend something similar to anyone who works with dementia patients.

First, rubber gloves are taped to your hands to simulate a lack of feeling and dexterity. Then, popcorn kernels are put in your shoes to reproduce the fibromyalgia of just moving around. You receive goggles that block out certain colors and have randomly appearing blind spots, as well as headphones that play a random selection of noises – cars honking, the phone ringing, music from your youth – everything having to do with your senses and experience of the world becomes chaotic and unpredictable.

After you’re suited up, a caretaker reads you a list of instructions for cleaning up your room at a care facility and getting ready for bed at night. Of course, you can’t hear him because your auditory hallucinations are too loud. He then leads you into your room, which is dark and messy with random flashes of light and strange sounds coming from places they shouldn’t. You know you’re supposed to be doing something, but not sure what, so you look to the printed instructions on the wall – which at this point you can’t read because the letters are jumbled up or missing. Time goes by, you surrender because trying to figure out what you’re supposed to do is futile, and you feel frustrated at your inability to act. Eventually, the caretaker comes back, sees you have not gotten ready for bed, and yells at you for not doing what he said.

From the caretaker’s point of view, he took you to your room and gave you simple instructions to do things you’ve done a thousand times before. He thinks he’s given you all the instruction you need but is unaware of how difficult everything is on your side of the equation. Without exercises like this, the hospital caretakers might make the same mistakes the caretaker in the simulated dementia experience made, and which caretakers of dementia patients do make all the time. Situations like this give rise to much of the vulnerability dementia patients feel, where the difficulty of daily life is made worse by our inadequate response to their needs.

The Elder & Disability Law Clinic is devoted to the dignity, care, and respect of dementia patients and seeks to promote a fuller understanding of the experience of living with dementia. Every person is deserving of being treated with dignity, and dementia patients are often at their most vulnerable. Treating dementia patients without understanding their condition can make them feel like they have no dignity, which should never be the case. The EDLC is committed to promoting informed care practices so that every caretaker can have the resources they need to be well-equipped in caring for their dementia patients.